Evidence
Alert

People who fund their own social care receive little help to navigate the system

People in England who pay for their own social care receive little assistance in making choices, even though arranging care requires a range of skills that they may not have.

Adult social care – for example personal assistance in the home or being cared for in a residential home – comes under the remit of local councils. However, people with assets above a certain level are expected to pay for their own social care. Usually, councils provide help and advice to people whose care they fund, to help them decide on and organise care. Those who pay for their own care, ‘self-funders’, are less likely to be offered this help.

Organising social care is challenging. People need skills in searching for information, deciding on the level of care they need, weighing up alternatives, managing a budget and dealing with employment or care home contracts. Getting it wrong can be expensive and could mean that needs are not met. However, there is little research in this area, and none looking at whether people who have help arranging care end up with more suitable arrangements than those who have no help.

Offering more help to people who want it, whether they pay for care or not, might lead to better results.

What’s the issue?

Between 170,000 and 290,00 people in England are thought to be self-funders and pay for their own social care. The figures are estimates as these people are not counted by local councils. But self-funders may make up around two in five (41%) of care home residents.

When local councils fund social care, typically they also arrange it. Self-funders are often left to seek out, choose and arrange care themselves, sometimes without any formal assessment of their needs.

This could result in people arranging insufficient care, or more care than they actually need.

The researchers reviewed the scientific literature to find out what skills are required for arranging social care, and whether people who have help in making these arrangements end up with more suitable care than those without help.

What’s new?

The authors identified an evidence gap: few papers addressed their questions directly. They looked at descriptions of tasks people found difficult or said they needed help with to determine the skills needed to arrange care. There were no studies comparing the suitability of care arrangements set up by those who had, and those who did not have, help.

They included 43 research papers in the analysis, including seven reviews of evidence, as well as studies based on interviews with people who had arranged social care, or their families.

The researchers picked out a number of key skills:

  • the ability to search for and manage information about their options
  • objective decision-making between options
  • the ability to manage money and budgets
  • administrative skills to manage paperwork
  • skills in employing care workers – for example writing job descriptions, advertising for carers, dealing with contracts and sorting out salaries, national insurance and legal issues
  • negotiation skills to decide on payment rates
  • people management skills.

The studies reported that a network of friends or family could help or make recommendations, but that not everyone was able to rely on this. In addition, they found that decisions were often made at a point of crisis, when people were emotional and less able to take objective decisions.

Why is this important?

The list of skills required to successfully navigate the system to arrange social care is daunting. They are more like the tasks carried out by a senior manager, than something older people or their families, with no experience of social care, can do on their own.

People without these skills trying to arrange care may end up without suitable arrangements. They might try to manage without social care, or with insufficient care, and put their health at risk.

Alternatively, they might arrange more intense care than is required. For example, people might enter residential care when with more advice, they could have remained in their own home with personal care and support. This could mean they run out of money to fund the care sooner than they otherwise would have done. In that case, they might need to fall back on council-funded support.

What’s next?

The Care Act 2014 states that everyone is entitled to a needs assessment by the local authority ahead of any discussion of their financial situation. This is intended to describe the amount of help an individual needs, regardless of who pays. But the researchers say this assessment often does not happen in practice.

This study found an evidence gap. There is little research about whether people with help in navigating the care system ended up with better quality of life, quality of care or sustainability of funding. This will begin to be addressed in the five-year DETERMIND project on inequalities in dementia care. One part of the DETERMIND project will investigate the health and well-being of self-funded and council-funded older people with dementia, along with those who have no formal care. It will look at the support they receive in arranging care.

Study author Kate Baxter said her previous research had shown that people who self-fund want better access to information about social care. The University of York, where the research was carried out, has put together a website to help people navigate the system, with videos, animations and written information.

You may be interested to read

The full paper: Baxter K, and others. What Skills Do Older Self-Funders in England Need to Arrange and Manage Social Care? Findings from a Scoping Review of the Literature. British Journal of Social Work.  2020;0:1–19

The DETERMIND research project, a collaboration of seven UK universities, looking at how to make dementia care and outcomes more equal

Getting Informed, a website from the University of York, providing information for self-funders on how to find care and support for older people

University of York PRESENCE (Preferences of Older Self-funders Navigating Community Social Care) study, which is investigating the help older self-funders require to navigate the social care system

A paper which explores how older self-funders' financial and social capital impacts on their experiences of choice and control: Baxter K, and others. Choice and control in social care: Experiences of older self‐funders in England. Soc Policy Admin. 2020;54:460–474

Funding

The study was funded by the NIHR School for Social Care Research.

Commentaries

Study author

Nobody really thinks about social care until they or family members need it. Our previous work shows that if someone rings up the local council, they get as far as the adult social care contact centre, then often get screened out and passed elsewhere. They are left to themselves to navigate the system.

People don’t really know what care they need, they don’t know what support is available, or how to go about arranging it. They could fall down at any of those steps.

When analysing the results, we thought the skills needed read like a job description for a highly skilled manager. That was an eye-opener. There’s a lot going on here that people need to be able to do.

The emotional aspects are important. It also shows that people need to have the confidence to take control of what they want to get out of the system and to keep fighting their corner. Getting through the system is almost a full- time job in itself.

Kate Baxter, Senior Research Fellow, Department of Social Policy and Social Work, University of York

Age UK

As with any transaction, people fear being overcharged or duped in some way and then having to dismiss a service provider and start again. Some counties have resources that help them to identify providers and this gives some reassurance of legitimacy.

In Oxfordshire, it is possible for self-funders to request support from the county council and be charged a fee for their assistance. In reality, this often proves difficult due to existing pressures on social care departments and because it contributes to waiting times. In the past, our local authority has worked with a private company as a ‘preferred provider’ to support self-funders but this relationship was not deemed successful, and was of some concern to us due to the level of cost incurred by the client for this assistance (though this company and others still exist).

A major issue is the availability of support, particularly for domiciliary care. You can have all the skills in the world, but if agencies do not have the capacity, you will not be able to source care. This is not a new issue but with Oxfordshire’s high housing costs, it is likely to continue.

Rachel Boland, Head of Information and Advice, Age UK Oxfordshire

Conflicts of Interest

None declared.